Tethered to a service dog, twins with autism find freedom.
An exclusive book excerpt by Melissa Fay Greene.
Odd break-ins were happening in a rural Cobb County neighborhood. A narrow asphalt road separated two facing rows of 40-year-old split-level houses, many with chickens or goats in their backyards. People stood in small bunches on the road and talked about the break-ins.
Nothing had been stolen yet, as far as anyone could tell, and “break-in” wasn’t literally true, since nothing was broken in the entering, but there were clues: a basement door or a breaker box stood open. The back had been lifted off a toilet and unevenly replaced. Then there was a ghostly sighting: a slim white leg and foot slipping out a quickly closing back door as the owners were coming in the front.
“What the hell?!” people said. This was gun-toting country. A few men made chuckling reference to what they might or might not do if they caught the intruder.
Halfway down the street stood the house of Mike Schwenker and Jennifer “Jenka” Schwenker: In her mid-40s, Jennifer is a round-faced, apple-cheeked elementary school teacher in granny glasses; a sweet, merry and lovably rattled type. Mike, in his early 50s, is an Army and Air Force vet and aviation engineer with neatly clipped straight brown hair and a graying goatee, a fact-based individual who considers the data, then weighs in toward optimism if possible.
In their house, the opposite problem was discussed. Nobody was breaking in. Somebody was breaking out.
Patiently, Mike Schwenker installed window-pin locks, loop locks, security bar locks and two-cylinder key-controlled dead locks at every window and door. He had degrees in aviation technologies and was a maintenance coordinator for Delta’s Boeing 757 fleet. Now he bent his mechanical know-how to preventing escapes. Having secured the house to his satisfaction — “It’s like a prison,” he told his wife — Mike latched his toolbox, stepped on a stool and slid it to the back of the cabinet above the refrigerator.
He pocketed the doorkeys and gave a set to Jennifer, which she also pocketed.
But the same ethereal little presence spooking the neighbors darted soundlessly behind their backs, located the toolbox, delicately extracted the Phillips-head screwdriver or 8/9 open-end wrench, pussyfooted up the stairs, perched on a windowsill, dismantled a window block, slid open the glass, and, like Peter Pan, flew away.
Also like Peter Pan, he left behind his shadow.
The neighborhood interloper, Ben, had an identical twin brother, Sam, who had the identical diagnosis.
“Both?” Jennifer had asked the developmental pediatrician when, in 2006, the 3-year-olds were diagnosed with autism spectrum disorder. But, honestly, she already knew. Among her teaching credentials was special education certification. Her darling boys were textbook cases. They hadn’t reached for objects, rolled over or sat up at the expected times. As toddlers, they overturned their toy cars and riding toys and spun the tires endlessly, hour after hour, both zoning out, hypnotized.When excited, they jogged in place, flapping their hands above their shoulders like hummingbirds.
Mike did not already know. He’d barely heard of autism. He thought it meant “mental retardation.” Did it mean they were becoming the people about whom others joshed: The elevator doesn’t reach the top floor? The lights are on but nobody’s home?
But once they started walking, the little boys followed their father on silent feet as he stripped floors and spackled walls and replaced wiring in their fixer-upper of a house. There were lulls in their self-stimulating behaviors when Mike took out his tools. They tracked the screwdriver or drill in his hand — from toolbox to task and back. The tools acted like magnets on the boys’ eyes; the eyes silently slid, like nickels along a slot, following the arc of the tools’movements. When Sam Schwenker applied his mechanical intuition to filming his favorite thing — sock puppets — on his parents’ cellphones and Ben Schwenker applied his mechanical sixth sense to undoing his father’s barriers and locks, Mike knew they took after him. The lights were on and somebody was home.
Dr. Leslie Rubin, director of developmental pediatrics at the Morehouse School of Medicine and former director of developmental pediatrics at Emory University School of Medicine, diagnosed the boys. He encouraged Mike and Jennifer to love the children, to treat them as normally as possible, and to stimulate them with every possible experience. “There is no telling what they might achieve,” he said.
But keeping the boys enriched, stimulated and safe was a tall order. Ben, like an estimated half of young children on the autism spectrum, is a “runner” or an “eloper.”
Where is Ben right now? his parents asked themselves with every breath. If one checked an iPhone,the other watched Ben. If one stood at the stove to cook, the other watched Ben. When Mike went out to work, Jennifer watched Ben all day. But, once in a great while, when they both looked down simultaneously at their phones, or let their thoughts drift outside the locked-up house, or Jennifer sagged into the sofa on an interminable afternoon and closed her eyes for a moment, Ben made his move.
“You can be a few feet from him and he gets away,” Jennifer told me. “He watches your gestures and intentions. He studies the whole situation, like a squirrel figuring out how to get in your bird-feeder.”
In the blink of an eye, the scrawny kid perched on an upstairs windowsill, screwdriver in hand,liberating himself. He dropped to the ground — his thin flop of straight brown hair ballooning briefly in the air — and took off across the backyard, pulling off his clothes as he ran. He scaled the tall wooden backyard fence that had been built to corral him and his brother. Naked, he disappeared into a no-man’s-land of fields, subdivisions, strip malls and state routes.
Typical of children with autism, Ben ran first toward the glitter of water. He stripped as he ran and leapfrogged fences because, regardless of the season, he planned to go swimming.
He skinny-dipped as the uninvited pool guest of some unknown neighbor, climbed out, and found his way into the house. He wanted to examine wiring, HVAC units, laundry vents, attic fans, and pipes.
Neighbors were mystified. Then a local couple nearly tripped over the culprit: They came in one night to find a skinny, wet, naked little white boy sprawled out on their kitchen floor with his head inside the cabinet under the sink. He appeared to be studying the garbage disposal unit. They yelped and demanded an explanation,but the boy ran away. They pursued him out the door and soon came across the Schwenkers, jogging down the road and calling, “BEN!”
Far worse for the Schwenkers were the times that no neighbor emerged with a complaint. Then Mike and Jennifer froze in the driveway, not knowing which way to run first, willing themselves not to hear a squeal of tires in the distance or the revving-up whoop of a siren. They tottered about — a few steps this way, a few steps that way — looking at each other with stricken faces. They dialed 911. The universal parental monotone prayer-to-avert-disaster moved on their lips: Please please please please or Oh God oh God oh God.
Mike worked long hours at Delta, including nights, weekends, 12-hour shifts. Other than the few hours per day the boys went to school (to special ed classrooms from which they came home frazzled and incoherent), Sam and Ben and Jennifer stayed sealed up in the silent house on the quiet street.
Locked inside the house all day, the boys “stimmed” (self-stimulated through repetitive movements), kicked, pinched, licked or slapped each other; they literally bounced off the walls. Jennifer fell into silence and claustrophobia; she was deeply alone. Though she resisted, she sometimes gave in to moments of weeping— alone in the bathroom, hiding her distress from the boys. There were days she hardly combed her hair or put on an attractive pair of slacks. Every expert agreed that the boys needed real-life adventures and experiences outside the house. But it mostly fell to Jennifer to take them.
The boys’ favorite outing was to Best Buy. Sam, ever on the lookout for puppets, pulled his mom toward the big-screen televisions in case “Sesame Street” was on, while Ben was desperate to reach the appliances. When Mike was available, they made good use of their time by splitting into teams of two. But when Jennifer, because they had to go somewhere, took the boys alone, she could end up shipwrecked: arms outstretched in the midst of the cellphone department as Ben tried to tow her toward Large Appliances, and Sam threw his weight into dragging her to TV & Home Theater.
And it did no good then to ask herself, What was I thinking? because she knew she had thought: If we don’t leave the house today, I will lose my mind. Of course by then they were becoming a public spectacle — both boys beginning to freak out, to squeal, to fall down and rage, squirming across the tired carpet, each in his longed-for direction.
It was a rare excursion that ended peacefully. By the time she staggered, dragging them, back across a parking lot, her hair was undone, her face red, her dress askew, and the boys were wailing and unhinged, their brief joy turned to confusion.
“I’m actually turning into a shut-in,” Jennifer told her husband as gently as possible, at a moment she thought he could bear to hear it. “I can’t hardly leave the house. I can’t hardly stay home anymore. It’s like I keep thinking: This is my life.” She followed up with a soft laugh.
They couldn’t afford a nanny; she knew they couldn’t. They couldn’t afford a babysitter. They couldn’t afford private school or private tutors. And there was no end in sight— not high school graduation, not college graduation, not young adulthood, not marriage, at least not at the rate they were going.
Jennifer researched autism endlessly. She joined online associations of “autism parents.” In early 2009, when the twins were 6, she read about a child showing improved day-to-day functioning with an “autism assistance dog.” She was intrigued and mentioned it to Mike. They loved dogs. Could this be an option for them?
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Every month, roughly after a year of waiting and fund-raising, a dozen families pull up in rental cars from the Dayton or Cincinnati airport or in wheelchair-accessible vans filthy from cross-country trips. Xenia, Ohio, is a leafy antebellum village, a former safe haven on the Underground Railroad. A few blocks from downtown, on three acres of land, sits the former VFW hall, an aluminum-sided one-story rectangular building. It’s a modern dog-training academy now.
In the parking lot, the families unload their gear: little crutches or small motorized wheelchairs; walkers and gait trainers; aerosol equipment like breathing machines, mouthpieces, masks and suction pumps; apnea monitors; floor mats and wedges; feeding tubes, feeding bags, and powdered formula; commode chairs,catheters and diapers from small to adult sizes.
The arriving families are white, African-American, Asian and multiracial. Deeply weary — and not just from the journey from across the United States and from a few foreign countries — these are people whose lives revolve around keeping “special needs” children alive, and safe. In some families, a child’s lifelong crisis began with an accident or with the onset of a disease; for some, it was a genetic syndrome confirmed soon after birth; for others, there were red flags during pregnancy; and for others, a child by adoption began to reveal issues for which the parents felt unprepared.
Many families include siblings of the special needs child, often too young to understand why they never get to be the center of attention and why even the new dog will not be theirs.
Some of these families have been cheated by unscrupulous operators. Service dog training is an unregulated industry. “There’s no national standard, no national certification, and no guide to reputable agencies,” Karen Shirk, 52, the founding director of 4 Paws, told me. “We end up picking up the pieces.”
Wheeling, carrying, coaxing, dragging or chasing their children across the gravel parking lot toward the double glass doors, many parents experience a sudden flash of hope. No one is unreservedly optimistic. Everyone is well acquainted with cycles of optimism, disappointment, exhaustion and despair. But as they spy handsome dogs frolicking on green acreage beyond the fence, some permit themselves the thought: This is one crazy idea that just might work.
Through online friends, the Schwenkers learned about the Ohio-based nonprofit, 4 Paws for Ability. The dogs were trained at a cost of $25,000 each, toward which a family was asked to contribute $13,000, with the difference made up by grants and charitable donations. The Schwenkers applied and were accepted; their church friends and Mike’s airline colleagues pitched in, and they hit their fund-raising goal in four months.
Photos of Barkley, a Labrador retriever/bloodhound mix, were emailed to the family. He was a young dog with a hangdog face and pendant ears mounted on a sleek athletic body with a tall whip tail.
In September 2009, the Schwenkers drove to Xenia for the mandatory 10-day class at which they would meet Barkley and learn to work with him. In typical neighborhood dog-training classes, people learn basic commands from a trainer and teach them to their dogs. At 4 Paws for Ability, people are introduced to beautifully trained dogs. They must try to master a new language and begin to grasp what is possible, what they have been given.
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Newcomers push through the front doors and walk smack into a smell. Everything reeks wildly of dog, with undertones of ammonia and a touch of the barnyard. Tufts of fur drift from room to room like milkweed seeds bobbing above a meadow. Though 4 Paws usually has 450 dogs in various stages of development, most live in foster homes. Still, a few dozen live under this roof during periods of advanced training and family classes.
In a middle room,crates and pens temporarily hold young golden retrievers, black Labs, German shepherd dogs, rough collies, goldendoodles, papillons and more, including donated dogs, rescued dogs, expensive scions of British or northern European lines, and puppies produced by in-house breeding programs. Dog walkers, vets, groomers, local foster families, college students fostering puppies on their campuses and visiting Scout troops come and go through a side door.
Presiding over all the soft-footed chaos is Karen Shirk who — like her clients — comes from deep in the trenches of disability, isolation and depression. She was rescued by a dog. Nevertheless, she and her staff warn the newly arriving families against the Lassie Myth. They know that, among the eager parents and veterans pushing into the social hall, there will be some who expect that — without much effort on their part— a brilliant dog will gallop into their lives and set everything straight.
To welcome families to the school she founded in 1998, Karen places a fingertip over the metal button of a tracheotomy tube in her throat, enabling speech, and speaks in a voice that is winningly husky. Positive changes will happen after placement, Karen tells a social hall full of nervous families, but the improvements will occur incrementally, and only if the adults in the household stay diligently engaged with their new dog, rounding out the training.
Most 4 Paws dogs are trained for children; about 5 percent go to military veterans with post-traumatic stress disorder. Every dog receives 500 hours of training, far above the industry average of 120 hours. “Mobility assistance dogs” are trained to open doors, turn on lights, bring the backpack. “Seizure assistance dogs” and“diabetic alert dogs” notify parents of the onset of a medical episode in a child. (Many predict incidents six to 18 hours in advance, with about 80 percent accuracy.) “Autism assistance dogs” and “fetal alcohol spectrum disorder (FASD)/drug exposure dogs” learn a variety of “behavior disruption” commands to help a child regain self-control, including “Lap,” for lying across a child and offering the comfort and stability of deep pressure; or “Disrupt,” for gently nudging a child’s hand away from self-harm like yanking out his hair or pounding his head with his fists. “Hearing ear dogs” respond to verbal commands and to hand signals; they make physical contact to alert their humans to doorbells, phones and fire alarms. “Multipurpose assistance dogs” are trained to address a wide range of issues. For children who “elope,” like Ben Schwenker, dogs are trained in tracking.
Training Director Jeremy Dulebohn, in his early 40s, studies the videos and medical files in order to set up kid-specific, family-specific dog training. One staffer will act out a child’s behavior or medical issues, including seizures, tantrums, self-harm or eloping. A second staffer teaches the chosen dog what to do in that event: run and get help, sit and bark, push close to the child to interrupt the behavior, or take off and find the child. The dog is rewarded for each step along a spectrum of increasingly appropriate responses.
Jeremy is the matchmaker between dogs and families. He knows every dog in the pipeline and closely studies every family’s application materials. “While I’m reading through a file and watching video,” Jeremy told me, “a dog will just pop into my mind: ‘This dog kind of reminds me of this family’ or ‘This dog kind of resembles this family.’”
In Karen’s eyes and in the view of most parents, he’s a wizard. Still, roughly 10 percent of the 4 Paws placements fail. Dogs are not one-size-fits-all.
“Some placements fail because parents aren’t prepared for how much extra work a dog will be,” Karen told me. “I understand: They can barely get themselves and their special needs child out the door in the morning; adding a dog — having to go through a few weeks or months of adjustment — feels overwhelming.”
Photo: Jennifer and Michael Schwenker use a service dog, Barkley, to help control their twins, Ben and Sam, who have autism. Sam has progressed to the point that he doesn’t need to be tethered in most situations, but Ben, a risk of running off, still does.
For the Schwenker twins, Jeremy had chosen the bloodhound/Lab mix and trained him in autism assistance, tracking and tethering. If Ben got away, Barkley would pursue him.But as long as Ben was clipped to Barkley, his chances of escape would be greatly diminished.
On the family’s first field trip in Xenia with Barkley, the great gleaming beast compliantly waited beside the 4 Paws van in a shopping mall parking lot while three leashes were attached to his harness: one sloped up to Jennifer and two hung sideways to the kids. Mike prepared to follow behind. Then the Schwenker family — like four planets in orbit around a shiny black sun — marched into the mall.
Tethered to Barkley, the boys tripped and tangled and double-stepped down the wide polished foyers. They seemed unaware of the fact that they were now — like water-skiers— being towed. If they tried to dash away, Barkley, like a puttering motorboat, churned forward and tugged them back into place.
After a few days of practice on the daily field trips, the children weren’t just stumbling alongside their ox-like friend, they were putting out their hands, patting his broad back and hanging on to his tail, almost as if they’d always known him. Ben, naturally, was interested in the mechanics of the thing. He liked to raise the flaps of Barkley’s ears to peer inside, and when the great dog yawned, Ben positioned himself to get the long view straight down the throat.
Back in Atlanta, Jennifer prepared for outings like a parachutist confirming every strap and rope before stepping into the air. It took a while to get the leashes and clips right; Ben mastered them instantly, escaped from the rigging, and ran away, but finally his mother outwitted him with a heavy-duty locking carabiner. He might get away from her but he would not get away from Barkley.
It was embarrassing, at first, to step into public. “We were a total spectacle, like a traveling circus act,” Jennifer told me. “People would stop to look at us while one of the kids who’s not paying attention walks smack into a post and then we’re trying not to clothesline people, catching them in the middle of a long leash.” At the center of the moving maypole plodded Barkley, his droopy bloodhound ears swinging, his droopy bloodhound eyes bright and amused. Her awareness that they were semi-ridiculous faded. And sometimes people who felt obliged to comment on her family — “You sure do have your hands full!” or “What’s wrong with them?” — offered positive remarks instead, like “What a beautiful dog.” Jennifer’s career as a shut-in was at an end.
Four days after moving to Atlanta with his new family, Barkley alerted Mike and Jennifer to a jailbreak. He barked, bucked and charged about restlessly at the back door and,sure enough, Ben was gone. They released Barkley outdoors with the command: “Find Ben!” and he instinctively ran through the three phases of tracking: He roamed in wide half-circles looking for the freshest traces of Ben (Search phase), slowed down and moved several paces along an invisible path (Deciding phase), then locked in and sped up, nose down, after the boy (Decision phase).
The career of the Cobb County Neighborhood Intruder had also come to an end.
From the forthcoming book “The Underdogs: Children, Dogs and the Power of Unconditional Love” by Melissa Fay Greene. Copyright @ 2016 Melissa Fay Greene. To be published May 17 by Ecco, an imprint of HarperCollins Publishers. Excerpted by permission.
ABOUT THE STORY
Whether she’s writing about the Atlanta Temple bombing, a coastal Georgia community unchanged by the civil rights movement or an Ethiopian widow opening her home to AIDS-orphaned children, Atlanta author Melissa Fay Greene has a remarkable way of taking a complex topic, dissecting it down to its basic components and holding up layers to the light where it’s seen anew. She applies that skill to the world of service dogs in her new book, “The Underdogs.” Excerpted here is a chapter about a Cobb County family whose life was changed by a Lab/bloodhound mix named Barkley.
Suzanne Van Atten
ABOUT THE AUTHOR
Melissa Fay Greene is the author of “Praying for Sheetrock,” “The Temple Bombing,” “Last Man Out,” “There Is No Me Without You” and “No Biking in the House Without a Helmet.” Her honors include two National Book Award nominations, a National Book Critics Circle Award nomination, the Robert F. Kennedy Book Award, the Chicago Tribune Heartland Prize, the ACLU National Civil Liberties Award and the Salon Book Award.
Melissa Fay Greene
7 p.m. May 17. Free. SCADshow, 173 14th St. NE Atlanta. www.acappellabooks.com.
7:30 p.m. May 19. $15. Marcus Jewish Community Center of Atlanta, 5342 Tilly Mill Road, Dunwoody. www.atlantajcc.org.
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